How Many Of You Have Celiac And Kids Have It Too

[Marie1976]

I apologize if this has already been discussed. I recently had blood tests that show I have celiac and I am getting an endoscopy next month. I am wondering if my kids might have it too, only because I know it is hereditary. Should I get them tested? Should I wait until after the biopsy?

My daughter is kind of a cranky little stinker but that could just be normal toddler behavior. My son was much more mellow at her age, but of course like all kids, he has his moments...

How many of you have celiac and have kids that have it too? Did you suspect they had it or did you get them tested because you found out you have it?

Thanks!

[Roda]

I had both of my kids screened (blood tests) a month after my diagnosis and both were negative. Fast forward to June 2010 my youngest started complaing of symptoms over a period of 6 months that lead me to get him reallergy tested and repeat blood work for celiac. His ttg came up positive so I put him gluten free based on it. I have seen improvement: no more complaints of stomach aches, no more fat in stool, temper tantrums have gotten way less, and an abnormal obsession he had with this shoe strings and velcro on sandals has completely gone away! So even though we didn't follow up with a GI or get the scope and biopsy, I feel he is celiac. My oldest son has tested negative three times but I still think he has celiac or gluten intolerence. I am going to go through the rest of the testing with him (providing a gi will scope him) while he is still consuming a regular diet. Despite the testing results, I am going to at least trial him gluten free at his allergist's recommendation. My kids see the same allergist and he feels that both my children should be on a gluten free diet.

[rosetapper23]

I was diagnosed with celiac when I was 47. My children were 16 and 18 at the time, and I knew immediately that my son and mother had it, too, because they'd exhibited almost identical symptoms to mine throughout their lives. In fact, we all thought we were going to die soon. My son, though, had a lot more digestive complaints starting at age 11 than my mother or I did. All of us showed symptoms of nutritional deficiencies. My daughter had also exhibited numerous symptoms, but she was an adult and in her first year of college when my son tested positive for celiac (no surprise there), so she refused to get tested and also refused to eat a gluten-free diet. I believe that someday her symptoms will become so bad, she'll consider the diet....but she loves sourdough bread, wheat pasta, and all the other "stuff" too much to give it up yet. Her symptoms are not as severe as my mother's, son's, and mine....so she feels she has some time to decide what to do. Of course, I don't agree with her on this. Perhaps when she marries one day and tries to get pregnant....or has a few miscarriages, she'll reconsider her stance.

As for knowing whether or not your kids have celiac, I think it would be advisable to have them tested. However, even if they test negative, you'll probably be serving gluten-free food from now on anyway, so they may end up benefiting from your diet. Whose knows--they may have gluten intolerance rather than celiac.

[hnybny91]

When I figured out I had celiac I convinced my daughter (18 yo) to give up gluten about a month later. She had been complaining about stomach pain for years (ever since her appendix ruptured and she had a nasty bacterial infection from it.) I also suspected that she too had DH. Once off gluten she no longer had srtomach pain and the what she thought was bad acne on her face improved.

Since then my mother has also given up gluten and is seeing a great improvement in all of her wacky ailments.

[aeraen]

Rosetapper23, I could almost have written your post word for word. My young adult daughter also refuses to be tested, although it is almost certain she is at least gluten intolerant. Like your daughter, she does not want to give up her favorite foods, nor does she want to deal with the inconvenience.

[Asianmom]

I found out I had celiac at the age of 19 and had symptoms since age 8 that went undiagnosed for years. Things got really bad before I was diagnosed positively, finally, with blood tests and positive biopsy. After many negative ones. My now 4 1/2 year old son started showing the typical symptoms about 1 1/2 years ago. Constant stomach aches, fatty stool, irritability and not wanting to eat anything after a while. Don't know why it took me so long to make the connection. I chose not to do the biopsy at such a young age...I just know. He has been on a gluten free diet for 1 1/2 years and all symptoms are gone! He actually grew 5 inches in 6 months after going gluten free and his ped was amazed. My younger son who is only 2 1/2 has had no typical issues. He is not malnutritioned looking, not really thin etc. Does not complain of stomach aches...etc. BUT he had lots of constipation. I think he may just be gluten intolerant and not have celiac. He has been on a gluten free diet for the last 1 1/2 years as well and now all his constipation issues have gone away. Our whole house is gluten free, and as a result my husband seems to get sick less often, and feel healthier overall (I think he could be gluten intolerant as well).

Do whatever you think is best for you. I can tell you way way way back in the day I had 7 negative blood tests, and 5 negative biopsies, before I tested positive and I have a high sensitivity to gluten. So for me, even though the tests are much more sensitive than they were many moons ago, I feel I don't need the test to see the same symptoms I had growing up. No need to put my little guys back on gluten to make sure they have it. My ped is comfortable with the celiac diagnosis for both as well, by seeing how much better they are doing. Plus my oldest son has been "glutened" a few times, and as a result has severe stomach cramping, diarrhea, and feels horrible for days. So I know.

I hope you can figure all this out!

[Mizzo]

My Mothers sister is Celiac, I believe my mom was Celiac but has passed away after multiple bouts of Cancer so she can't be tested. My daughter has Celiac but my husband and I tested negative (so far ) for it.

My oldest sister tested negtive , my younger sister will not get tested despite my concerns ( noticeable weight loss in last 5 years) and my next older sister (yup all girls here) who has an auto immune disorder already ,her Dr doesn't feel it's necessary to test her (@#$%^&) )and she is unwilling to push the issue due to impending loss of bread in her life. UgH!!!!!

I only got a test beause I faked stomach pains and symptoms as well as my husband otherwise our Dr would not order the test. FYI, I am thinking about the gene test.

My sis that did get tested , got tested easily because she is a Medical assistant working for the Dr who ordered the panel. Many DR's are still not ready to order the test for family members due to rising costs of insurance.

I have cut back but not eliminated gluten from my diet , same with my husband. and we keep a 95% gluten-free home. I do believe my husband may have an intolerance but since he HATES Doctors i can't get him to be allergy tested.

The disease runs in families thats for sure but extended families are reluctant to get tested and Dr's are reluctant to test. Vicious circle. IMO

[ravenwoodglass]

It took many painfilled years for me to be diagnosed because I show a false negative in blood tests they did. 6 months after I was finally diagnosed had both of my teens tested. Both were positive with blood tests and one had the biopsy which was also positive. Their postive blood work convinced my ex husband to be tested and he was positive also. It is very, very likely that both my twin and mother were also celiac.

[Marie1976]

I guess I'll wait till after endo (blood tests say I have it) to decide whether to get little ones tested. I have suggested the blood test for some (adult) members of my family but they act like this is some kind of little project I have, or a phase or something. Finally I told my mom I am not trying to drag her down with me -- if she has it, she could stop eating gluten and maybe feel better! I am trying to help her. I am sure I am not the only one in my entire family that has this. But I guess no one else is willing to think they have it too. So... whatever.

Thanks for your responses!

[MitziG]

My 7 yr old son was recently diagnosed after two years of constant abdominal pain that the doctors had blamed on everything from acid-reflux to school anxiety. When I suggested celiacs I was told that it was a "very rare disease" and that he didn't look like a "celiac kid." It was only after the pain got so bad that he missed a straight month of school and I was referred to a pediatric gastroenterologist who did a scope that they found the Celiacs. My daughter and I have since had blood tests that were positive and are awaiting biopsy to confirm. BUT...my reason for telling you this is once I started extensively researching this disease, I saw so many OBVIOUS signs that her and I have that i have no doubt it will be positive for us too. So, my advice to you is do some research and see if there are a number of signs present in your kids that could indicate it. So many symptoms are NOT abdominal (like neuropathy, hot flashes, night sweats, constant infections, sinus trouble, skin rashes, behavioral problems, etc.) if your kids have a number of them, it is a good probabilty that they have a problem with gluten too. Get the blood test done for sure, then even if it tests negative, I would give the gluten-free diet a try and see if it relieves any of their other problems. You dont want your kids to have to go through a lifetime of weird health issues like I have!

[julandjo]

I had no idea I had Celiac until my kids came along! They both had "severe MSPI" as newborns, and then as they got old enough for table food we discovered that ANY exposure to gluten caused extreme mood/behavior changes, bloody stools and rashes. (It's actually way more foods than just gluten, but gluten is the worst offender). They're 2 and 4 years old now and have lived gluten free their whole lives. I got tested last year because of their food problems and lo and behold - I'm a raging Celiac with a whole host of food problems! Surprise!

[luvs2eat]

I was diagnosed in my late 40s... the ONLY member in my extended family to have celiac disease. Middle daughter was diagnosed about 4 years later at about age 25. Like me, she was diagnosed very quickly (i.e... we weren't showing symptoms for years like so many) and her doc told her that she was lucky because she could avoid future things like anemia and osteoporosis being diagnosed so early. Youngest DD developed it a few years later at about age 26 and has had the worst time w/ it... her diet is extremely limited. Oldest DD was diagnosed last year at age 32.

Still no one in my extended family has it... it's just my 3 daughters and me!